THE REAL "ELEPHANT MAN" DISEASE
Though Huang is commonly called the ?Elephant Man,? he does not suffer from the Proteus Syndrome, the disease frequently associated with this nickname.
Proteus Syndrome, also known as the ?Elephant Man?s Disease,? differs from neurofibromatosis in many different ways. While neurofibromatosis is more common, the Proteus Syndrome is much rarer: Only about 100 cases are documented each year.
The disease was first recognized by Dr. Michael Cohen Jr. in 1979, but it was only until the release one year later of the screenplay entitled ?The Elephant Man? that the disease became more well-known. Based on the life of Joseph Merrick, a 19th century Englishman, the film depicts a severely deformed man suffering from what many people now incorrectly assume is neurofibromatosis. Although the two diseases cause many similar symptoms?abnormal growth, tumors, deformation?they are unrelated.
Learn more about the Proteus Syndrome.
WHAT IS NEUROFIBROMATOSIS?
According to Neurofibromatosis, Inc
Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on the nerves anywhere in the body at any time. This progressive disorder affects all races, all ethnic groups and both sexes equally.
NF is one of the most common genetic disorders in the United States (one in every 3,000 to 4,000 births). NF has two genetically distinct forms: NF-1 and NF-2. The effects of NF are unpredictable and have varying manifestations and degrees of severity. There is no known cure for either form of NF, although the genes for both NF-1 and NF-2 have been identified.
NF is an autosomal dominant genetic condition; it is not contagious. Approximately 50% of those affected with neurofibromatosis have a prior family history of NF. The other 50% of cases are the result of spontaneous genetic mutation. If an individual does not have NF, s/he can not pass it on to his/her children.
For further information regarding NF and ways you can help:
Neurofibromatosis, Inc
Children's Tumor Foundation
National Institute of Neurological Disorders and Stroke